Monday, April 29, 2013

Dispatches from the hospital

keeping up the family sense of humor
 Dad is not doing well.
I went by to see him yesterday before my Spa Day appointment (which, while I desperately needed it, was not as relaxing as it wanted to be), and he looked much worse. He was having a hard time breathing, and was feeling dizzy. They had him on oxygen (still do), and his blood pressure was up from earlier that day, but still pretty low.
After Spa Day, I went to dinner with my friends. I was about half-way done when my phone rang. It was Dad saying that things had taken a turn, and since I was still in Seattle, it would be great if I could come back to the hospital. I packed up, paid and hugged a few people before all-but running to my car and heading back down; calling the Emperor on the way.
As you can see above, my sibs were already here. We tried to lighten the mood, but it was pretty heavy. Turns out he had a blood clot in his lung. The doctors and nurses got him on a few meds to get it broken up, knocked him out and we three went into the fishbowl on the end of the floor and talked a little... making plans for the end.
Because, it looks like we're coming to that. My dad is dying. My sibs stayed as late as they could before heading home to try to sleep before sitting in uncomfortable anguish in their classes today. I don't envy them the inability to focus on school, but at the same time having a distraction is a pleasant luxury at this time in a person's life.
By the time the Emperor arrived, I was thoroughly exhausted, and had made plans to stay at Captain Jack's since he lives less than 10 minutes from the hospital and had decided it was better if I stayed close. The Emperor had to go home to take care of our royal dog and try to get some sleep so he could work today. Jack and I talked a while, had snacks (I had tea, he had wine). When I was asked by my metamoure how I'm doing, I said "I'm a case of baskets."
My phone rang at 1:40 in the morning. The call nurse needed consent to give Dad some blood, but he was so out of it they had to get it from me. Of course I said yes. They apologized for waking me, but I hadn't been asleep. Both Jack and I were poised to throw on pants and come back down, but we ended up not needing to, which was good.
After that everything was quiet, and I slept. My dreams were weird, but I did dream which is what's most important; although I did get up 4-5 times during the night. I'm back at the hospital for the day. The Emperor brought me clean clothes, makeup, shoes, chargers for my devices... apparently the only thing I'm missing is headphones, which isn't entirely bad.
Dad ate breakfast this morning. His blood count is back up, so is his BP, but it's become clear that we're coming to the end. My dad is dying. The doctors and nurses are going to get him to a point where he's comfortable, then transfer him home for hospice care. The family will come together, take turns being there with him, and I guess when it's time we'll still be able to let him go together.
To an extent I have already let go. The experience of the last couple of weeks has been too taxing for him. All he wants is to go home... and then go Home. His faith is strong, and apart from being trapped in body that is coming to the end of its usefulness, I think he's really only worried about us. I know this is not what he had planned... none of us planned it this way, but I guess his work is done, and what's compelling him forward is stronger than what would hold him here.
He's sleeping now. Having weird dreams. I hope he's also getting some rest... or maybe there isn't rest to be had at this stage. Maybe he's on a Vision Quest to help as many other people as he can for a few minutes at a time; trading emotions with them so that they feel all the love that he is getting from us.
Or just weird dreams.

Monday, April 22, 2013

Losing very slowly...

It's hard to really understand how important someone is to you until their position in your life becomes threatened. This is that concept of "you know who your friends are" when things start to get tough in life, but I think it's rather fucked up.
Fucked up because it's even harder to tell someone "hey, I'm really glad you're in my life right now, and while I'm not looking to jump to a greater significance before it's time, but I wanted you to know that I don't think I'd be able to function as well if you weren't around." Even when there isn't a dire circumstance forever looming itself over your life. Maybe that's why we have each other though, so we can have those feelings and that security and not really need to say it outloud...
But when you're losing someone slowly, there's this odd perspective that you start to gain. I don't quite know how to describe it, because I'm only starting to gain as I'm beginning to lose my father but the veneer is stripped away sort of and all you see is what's underneath. The human-ness of my father becomes not only more evident and obvious day by day, but more important.
Our relationship has been tumultuous, as anyone who knows me well knows. For a while our only contact was written. He would write me letters, I would write back. Sometimes he would send a money order, just cuz he could and wanted to, but it was like we were on opposite sides of the street and I was refusing to look at him and definitely didn't want to walk on the same side, so he would just pace me from where he was, letting me know that he was there when I wanted to see him.
I think he did it that way because he had just lost his sister, and realized that his children were more important than his ego. During that time, he also built up really solid relationships with my siblings, to the point where they don't remember the bad stuff that I do, and I'm really glad of that. When I realized how much he had changed, and how the father they knew was not like the one I remembered, I began to soften toward him. He had worked hard to build that relationship with my brother and sister, and I also realized he was working hard to rebuild a relationship with me.
A few years ago, when time had had its chance to soften me, give me more wisdom, and teach me that being right wasn't always the most important thing; I started really having a relationship with him. We would talk sometimes, be open and vulnerable, and I eventually got to the point where I would say "I love you too", instead of "thank you" (which was a big deal). And it almost feels like just when that was really starting to become strong and influential for both of us, it's very slowly being pulled away.
I don't know. Maybe his mission in life was to become daddy again. His efforts don't erase what happened before, it's not alright, but the efforts he did make with me as an adult made it possible to make new memories. At least whatever we have built is not being lost all at once, but it still feels unjust that it be taken away mere moments after being forged.
Or perhaps more just because now time and human-ness won't be able to tarnish what we have built.

Thursday, April 18, 2013

My dad is in the hospital. He came to the hospital to get some blood cuz his doctors told him he was really anemic but it turns out he's been having some abdominal swelling. Turns out he's got a peritoneal bleed and they're keeping him over night to make sure it goes away and doesn't become more serious. I came down to spend some time with him and to comfort myself...

That was a couple of days ago. I've been trying to go about my life (found my dress for the Dame-Toolmaker wedding; date with Capt Jack), but I've been to the hospital every day since Tuesday. If he isn't discharged tomorrow, I'll probably be back then too.

My routine is the same: come by, stick around for a couple hours (it's hard to stay for more than 2), ask the nurse's station if they will validate me- I mean my parking (the nurses always laugh and tell me I look nice); then I head out to the parking garage and stop to cry on the corner where I know so many have done. I guess I feel some comfort in knowing I am one of a multitude who stop at that corner to breakdown.

The hardest part about all this is not being able to do anything to help except show up. So, having an option, I'm going to exercise it with gusto and commitment, even though it's kinda scary being here and seeing my dad in this condition.

The next worst part: he looks like a skeleton. His once-robust head of hair has been winnowed down to gossamer strands and his beard is shockingly white. I can see his ribs through the skin on his back.

He's not dying right now. It's just an annoying complication of the process of trying to defeat death. When this all started I asked what the survival rate was for this kind of cancer and g-d met me with the answer of "100%". Whatever happens will be what happens, but I'm trusting g-d on this one, even if it takes a while and looks bleak at times.

Wednesday, April 10, 2013

Ow, fuck

So here's the complete picture of how hard it sucks to be me some times:
I have a genetic autoimmune disorder that causes my body to literally murder my small intestine even if I have a tiny teeny teeny tiny little bit of a substance that is in ALL FOOD EVERYWHERE (even the food that says it's gluten free) except produce, much of which I'm sensitive to because of the damage done to my intestines by years of eating gluten and not knowing it was causing serious problems.
This in turn causes widespread, unpredictable, gnawing, aching pain that most of the time is merely annoying, but, like daily exposure to Zooey Deschanel, a person tends to go mad after a while. Sometimes, though, I just have pain for no reason. Sometimes I have little itchy bits of skin on my ankles or knees. Sometimes, it feels like the skin on my back is on fire, or (like right now) like my knee is coming apart or my hip is out of socket, when neither of these things are happening. My current state is significantly more annoying that the girl who broke Joseph Gordon-Levitt's heart in that movie I never saw, but the worst part is that all I can fucking do is wait for it to stop hurting.
Now, since eating = pain, you can probably guess where the obsession with not eating came from. While it was bolstered by cultural obsession with thinness, and my mother's own suffering at the hands of a similar demon, the struggle that I have had with my eating disorder in the last few years has been related to the whole eating = pain dilemma. This also means that there is a simple, straight forward answer that helps me (most of the time) to feel better: a mindful, careful diet, that involves avoiding foods that make me feel like shit while also avoiding the incorporation of emotional stigma associated with foods that don't make me feel like shit.
But, I sometimes get stuck in a pain cycle that is hard to break because of how it interrupts my sleep, thereby disrupting my brain's ability to break the pain cycle. An uninterrupted pain cycle will see an escalation in pain and sensitivity to any sensation, sometimes rendering all sensation as painful. It makes me irritable, ruins my appetite, dulls my senses, and makes my brain go
And that's not an easy thing to deal with as someone who is exceedingly intellectual. Funnily enough, my friends will sometimes ask how I deal with it without becoming a complete emotional wreck... I couldn't explain it if I tried. All I know is that smiling makes me happy, and happiness makes it easier to ignore my pain... although, I have days when it's just too much and all I can do is cuddle up with Derp, Markfrog, Stewart, and anyone else who'll join me and watch internet until I fall asleep from exhaustion.
Tonight will be the 5th night in a row that I do that.

Saturday, April 6, 2013

Things I'm doing differently

I refuse to wear Spanx ever again. Never mind that they're hideously uncomfortable, and make me sweat like a guilty person in a courtroom (and do that window-shade thing where they roll down my back unless tucked under the band of my bra because my ribcage is so tiny). They don't make you look thinner. They just move the fat around so it's more evenly spread out which eliminates your curves. All so-called "shape wear" does that and it's a travesty. Also, wearing Spanx or any of their related garments negates the ability to wear sexy panties, which is also completely unacceptable.
I don't weigh myself anymore. I don't want to know. Partly this is because I'm scared that I've gained so much weight that I would freak the fuck out and hide in a closet for a week without eating. Aside from that, I've realized it's unimportant.
I have unfriended people on Facebook who regularly fat-shame others. It's unacceptable. Often these people will use "science" to justify their bigotry, but it's still straight-up bullshit. My health is between me and my doctor, and you get to know jack shit about it by looking at me. Funny thing is, I "don't look sick" when my fibro is acting up, but when I'm just being fat I do. Weird. Also, fuck you.
I like being touched by my partners. I pay more attention to the enjoyment of my form and it is wonderful. I still have a moderate fear of being touched by people I'm not intimate with, but that's partly because my nerves are frequently raw and it hurts to be touched. However, hugs from close friends and family are more welcome than they used to be.
When I don't eat, I feel really sick. Yesterday's flare was made infinitely worse by the fact that not only did I not have an appetite, but the thought of eating made me feel like I was going to throw up. The flare comes with pain, fatigue, and this weird brain fog, but I felt a million times worse because I had no fuel in my body. I've been feeding myself regularly for several months now, and the effects of not being able to eat are a lot different than they were when I was intentionally starving myself or restricting calories.
I experience fullness and listen to those messages. On Wednesday night Captain Jack and I went to my favorite restaurant for pizza! Yay pizza! It used to be I would eat the entire thing (or more than half, even after the gluten free cheese sticks I ordered), and feel horrible afterward. This time, I had my cheese sticks, and felt full after 1.5 pieces of pizza. I saved the rest for lunch the next day. It was nice to be able to get along with my body like that.
I avoid the words "should", primarily as related to food but also in general conversation. "Should" and "need" are subtle shaming words, and when I tell myself I "should" eat some vegetables, I am shaming myself for not. I still have a lot of toxicity to filter out of my brain and body because of my disordered eating, and that will repair on its own as long as I keep listening to my body and treating it well.
When I feel hungry I say "I'm hungry" and find food, instead of ignoring the signals because "I have better things to do" than eat; and I definitely don't consider it a trophy any more. It used to be that hunger pangs made me feel skinny. I have recognized that I am not skinny or going to be, and that those signals are my body asking for something. I want to keep trusting myself so I heed those warnings.
Relatedly, when I have a desire for a certain flavor or food, I find a way to have that food. The other night I wanted orange soda. So I had one. It was yummy, and I only wanted one soda (instead of several like I would have in the past). Sometimes I want a specific kind of cheese, or some sweets, or even a specific meat or veggie. I have them, enjoy meeting that desire and don't feel the need to over indulge because the only foods that are forbidden now are the ones that make me feel bad (like anything with gluten).
I'm sure there are some other things that have changed, but this is a good start. There are times when I wish that I could tell other people to stop saying things about their weight or shape. It bothers me, it triggers me when people throw this kind of stuff around because they don't even know how horrible it is, or what it means when they say these things. But some people will never understand, and some people will never give up their hate and fear of fat.
For now, I'm able to close my eyes and go somewhere else, and that's what I do. I don't like it, but I have some serious NRE to fall back on when I need a boost to my smile...

Monday, April 1, 2013

"Vulnerability is our most accurate measure of courage"

I love Brene Brown. I was listening to a Ted Radio Hour (NPR) about "Making Mistakes" and Brene came on. It reminded me of something that started me down the road where I'm talking to the internet about my crazy relationship with my body. This reminder is important because I've been noticing myself restricting again: having liquid meals, not eating enough, and having to watch myself really closely so I don't dive back into other symptoms.
It's when I start thinking of myself as being invulnerable that these things come back up. But when I do allow myself to be vulnerable with people who can support me in that, that I feel like it's okay to be me; to be the flawed, overly-attached, extremely emotional*, slightly mad human being without being ashamed of my body, my actions, my soul, or any of it.
I feel the safest when I'm with people who can be vulnerable with me. These people are my peers. I respect and love them, and if I pull myself away from them I lose everything. So when I take a brave step and ask a question that's been on my mind, one that risks a lot, and my query is met by a comforting hand I feel safe. And it's a kind of safety that hasn't really existed very much in my life because I was taught never to let them see you sweat; just go along and get along, if things are meant to be they will be; don't make waves; don't let anyone know that you are emotionally attached to them because they'll use it against you.
Society is really fucked up like that. We, as a culture, do use it against others when they become attached. Attachment is weakness. I don't know how long this idea has been popular, but the people who practice this are not strong. They're not put together. If you think you can do it all by yourself you're doomed, and I know this because I've been reliving that doom cycle and I've climbed up out of it to the realization that you have to be vulnerable if you want anything out of life.
I keep thinking back to my director talking to me about Jesus. She seemed so invulnerable there. So tough. So certain. And I know this had the opposite effect on me of what was intended. I already know that invulnerability, or thinking that you can do anything because of some magic thing you've got doesn't work. It's never worked. All that is is pride, and pride is just a slip-cover for shame. I think back on this experience and realize I don't want to be like that. I never want to be so sure of myself that I can tell someone else what to believe. I never want to be so certain that everything is exactly one way because that takes the mystery out of life**.
I want to be vulnerable with the people who can handle it, and graceful with those who can't. I have always been raw and emotional. I have always needed other people in my life who can be where I am. And this is a deep, primal need on the level with food; when I deny myself that vulnerability and openness, I start to deny myself other necessities as well. And then my hair starts coming out in clumps, and I spiral into a place where there is no safety and no joy.
There is a difference between preaching to someone, and sharing an honest, vulnerable moment with them. I always get more inspiration, comfort, and motivation from those who share their scars with me. I'm not interested in your certainty now, I'm interested in your uncertainty then. You can connect with someone emotionally this way, rather than bludgeoning them with what you know to be true now. This is a lot of why I share all this stuff with you, because I know that there are people out there who feel this way too, but don't think it's okay to share it or think they can do it on their own.
You can't. I don't mean that as in it's not possible, or you don't have the strength or whatever. You do have the strength to deal with shit on your own, everyone does. But when you discover this amazing thing called vulnerability, and ask for help and forge a connection to other people who believe in your shared goal as much as you do, well... you stop wanting to do it on your own. It stops being possible because so many people have surrounded you to make it happen. You have partners in whatever goal you're trying to reach, and that's much more fulfilling and world-changing than doing it by yourself. Even if it feels unsafe to ask for help. 
All that comes from vulnerability. From bearing your heart one question at a time, and seeing the vision come to life through other people reaching back. Sometimes those people do say "stop, you can't go this way, it's not right for you", but you keep that growth even if you lose the connection to that person. Most of the time though, it's people reaching back with love and support.
I want to live that way. I would rather have that life than be skinny.
*And my emotions have fucking weird side-effects.
**And with it, g-d.